abc letter h for hurdle

A old school friend dug up an old school mag and posted me doing Hurdle.

the Spina Bifida Association. The condition affects one in every 1000 pregnancies in New Zealand.

Mum raises awareness for Ivy Pittams, a baby born without a bum

23 Aug, 2018 10:00am

5 minutes to read

A Givealittle page has been set up for Ivy Pittams, a baby born with severe abnormalities.

NZ Herald

From the outside 8-month-old Ivy Pittams is a chatty, feisty and healthy baby - but she has spent most of her in and out of the hospital because she was born without a bottom.

"This brave little lady came out absolutely perfect except for one vital component: a bum," says her mum Colleen Parker, 23.

"She has a series of congenital conditions, all linked to an unusual form of spina bifida, which has left her with anal atresia, sacral aplasia, pelvic dysplasia, spinal stenosis and other secondary conditions."

Basically, Ivy has no bottom, no tailbone and everything from the hips down was a bit different.

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"A lot of the stuff around that area has not formed fully."

Speaking from her daughter's bedside at Wellington Children's Hospital, Parker said she and partner Simon Pittams, 32, a hotel conference porter, had done their best to budget for medical expenses while looking after their two other children on one income.

"Unfortunately things have not gone to plan for her, and we are having to stay here for much longer than expected."

Wellington Hospital paediatric surgeon Dr Toni-Maree Wilson said Ivy's condition was "extremely rare" as not only was her bum in the wrong place but she also didn't have a closed spinal cord.

"What we have done is bring the bowel out to the skin so she can poo, then we've basically made her a bum. So the plumbing is back to normal but it was hard to say how well that will work."

After three surgeries, plus two other hospital stays for post-operation complications, Parker was able to take her baby home today but there was still a lot of unknown.

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Wilson said at the moment everything seemed stable.

"There's no plan at this point to do anything about her spina bifida - it's not liable to get infected but she may need something to deal with that when she's older.

"She can pee normally and her bowels have started to work but we won't know until she is three or four - when she starts to go through toilet training - what her eventual bowel function is going to be like," Wilson said.

She said on a scale from mild to life-threatening, Ivy's condition had become moderate and she will continue to be monitored.

"She is likely to need further surgery for her spine as she grows," Wilson said.

Despite all of her hardships, Ivy has remained positive and a relatively normal baby, Parker said.

"She's definitely still a happy wee girl - there are lots of smiles, even when she has a 'owie'.

"She is very stubborn and resilient."

Ivy was born on the 1st of December 2017: "This brave little lady came out absolutely perfect except for one vital component: a bum!". Photo / Givealittle

A Givealittle page was started to help them cover living expenses while at their Masterton home and at the hospital. The page has already raised more than $1000.

Her partner would soon have to return to work, meaning Parker, who was required to be by her daughter's side at all times, was stretched thin.

"Neither of us drive, I have my learner's [licence], we are catching the train. We want to give them [family] a bit."

Any donations they receive will go towards living expenses for back home where her two stepsons were being taken care of, as well as their expenses while staying in hospital and travel to and from each location.

"It becomes expensive after a while. A friend has been looking after our boys."

Parker also wanted to give some money back to the friends and family that had supported them through the countless hospital visits and commutes to and from the hospital.

"What we have left over in the end, will be given to Wellington Children's Hospital so the wonderful staff here can continue to provide an amazing environment for sick children."

"The staff here have been so helpful and supportive. It has been awesome and made things a lot easier."

The main reason for going public, however, was to raise awareness of spina bifida and sacral aplasia, lack of tailbone, which was more common than people might think, Parker said.

"There is an opening at the base of the spinal column where the nerves are exposed.

"At the moment her leg function is fine. As the spinal nerves stretch with the growth we don't know if her cord is tethered."

They wouldn't know until Ivy was older if her ability to walk would be affected.

New Zealand Organisation for Rare Diseases [NZORD] chief executive Dr Collette Bromhead said Ivy's condition was also known as caudal regression syndrome - a form of spina bifida - and was as rare as one in every 100,000 births.

"It's an extremely rare and it's sporadic so there's no known genetic cause, which means it arises spontaneously.

"That said, there are some known genetic associations from prior research but no one has actually hit the nail on the head as to what's causing it," Bromhead said.

It was a condition that could range from being mild to life-threatening.

Bromhead said she couldn't comment on Ivy's individual case but in a general sense it was likely other neurological consequences would be affected.

"Things like bladder and bowel control could be affected but might not become apparent until the child is older."

Bromhead said the condition had multi-factorial issues - including abnormalities in the kidney, lungs and heart - which meant the patient required a team of doctors specialising in different areas.

"It's extremely unfortunate and likely she will have a medically intensively early part of her life while they get these things under control.

"It's not a matter of getting medicine to fix it, it's more getting the best possible team in."

Spina bifida is the second most common birth defect worldwide, according to the Spina Bifida Association.

The condition affects one in every 1000 pregnancies in New Zealand.

aucklander words of healing

http://www.theaucklander.co.nz/living/news/words-of-healing/3954293/
This magazine comes with the New Zealand Herald, one of the biggest mainstream newspaper in the country.


Words of healing
Rebecca Blithe | 3rd June 2011
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Ann Chin has published a book about the death of her infant son. Photo / Kellie Blizard
A mother's account of the death of her newborn son has been turned into a book in the hope it will help other mothers heal. Rebecca Blithe meets the author.

"The specialist said, 'You're going to have a normal baby'," says Ann Chin, as she sits with a pile of her recently published book, Diary of a Bereaved Mother.

But the days that followed the birth of her son, Andrew, proved anything but normal.

"Once I had my baby they realised he was dying," she says, of his diagnosis of Campomelic syndrome; a bone and cartilage condition resulting in short limbs and breathing problems because of a small chest capacity.

"They knew because of the scans, but they didn't investigate because it was a rare thing," she says, of the abnormalities. "When the baby was born, they resuscitated him. He was going to die that night. He survived for 55 days.

"One afternoon I was told he had died. He stopped breathing, he turned black, he was dead for half of the afternoon. Then he began breathing again." Describing that afternoon, the author seems lost for words. "You can't really give words, except that it was heart-wrenching, I was in a black tunnel."

During this period, Mrs Chin stayed in the nurses' home at National Women's Hospital, awaiting her baby's death, and writing.

"It was not only a diary for myself but I was writing letters to family in Australia and Singapore.

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I kept carbon copies," she says, adding her father had made his six children write daily compositions from a young age.

Twenty-one years later, after meeting other women who lost children, she decided to revisit her ordeal, in the hope of helping mothers cope and those close to them understand. "Six hundred babies a year die. That's more than the road toll. [Compared to the funding for road safety] there's just nothing provided for us."

Mrs Chin, who teaches English as a second language, says reliving the experience was difficult but cathartic.

"I took out all my old files. I read them and I cried. I sat at the computer and I cried. But after a while, I was okay. Then I finished the first draft on his anniversary."

She says the feedback so far has been positive, especially from those who have had similar experiences.

"One of the mothers [from a Stillborn and Newborn Death support group], she just cried. She said to have someone writing about it was really helpful. I've spoken to grandparents as well. People tell me, 'Now I understand'."

Her story also tells of her disappointment with some of the staff at the antenatal unit and the importance of cultural sensitivity. "We had two doctors who kept saying, 'This is his problem'," she says, of medical staff shifting the blame.

The book has been requested by one of Mrs Chin's doctors, who is now based at the University of Toronto, Canada, to assist with training and hospital management procedures.

Dr Simon Rowley is a consultant at Starship Children's Hospital who's been given a copy of the book.
"It is a good reminder to all health professionals that when our patients leave us, the story does not end for the parents. The detail is amazing, and every little thought and action seems to have been recorded as it happened, and then has been reflected upon.

"For parents undergoing similar experiences this book could be a great comfort. For health professionals, I would see it as essential reading."

Further reading

Diary of a Bereaved Mother is available for $25 at The Women's Bookstore, 105 Ponsonby Rd, or email Ann Chin: annkschin@yahoo.com

abc letter G for Gingko and Ginseng

When I was little, I used to help Grandpa and Mum gently hammer the Gingko Biloba aka PAK GOU in Chinese in Mum's pestle and mortar. I have to use the right force, too hard, and I mesh the expensive kernel, and too lightly, the shell of the kernel won't crack open. Then we had to gently peel the skin and finally remove the germ. It is this germ which must be removed as it has a bitter taste and could be poisonous. These are then used to make sweets or the filling for the Chinese Glutinous rice dumpling, our CHUNG. It was tedious work and I vowed I would never buy the stuff when I grew up.

My sister is a qualified Chinese practitioner. Dad had mini stroke before he died, and I am always interest in alternative medicine as a head knowledge.

Vascular dementia is caused by problems with blood circulation to the brain.
Most commonly, patients suffer a series of "mini strokes", which is when there's a sudden blockage or a leak of blood to brain cells causing them to die.This can affect a patient's memory, speech and cognitive ability.
Researchers in Western Sydney are now embracing a Chinese herbal extract that is showing promising signs of helping improve the memory, and daily lives, of those with the condition.
Sailuotongm, or S-L-T, is in the final phase of trials here in Australia.
Chief Investigator of Researchers Dennis Chung, says the team at NICM Health Research Institute will take advantage of this so called "multi-target" approach of traditional medicine
"We have done quite a range of pre-clinical lab studies which has shown that this particular herbal extract can improve blood circulation to the brain and actually can stop the blood from clotting, " Professor Chung said.
"There's no viable option for patients, at the moment, and we really hope that we will be able to confirm the findings from phase two and this will be the last part of the clinical development."
"We're targeting mild to moderate (vascular dementia), it would be too hard if in the advanced stage, so we're recruiting patients who have established diagnosis of vascular dementia," says Professor Chung said.
"The message is to be really open minded...because it’s herbal, there's always people may not actually believe it works but there's lots of science behind it."
Patients on the trial will take two affordable tablets, twice a day, with each capsule made of three herbs - Ginkgo, Ginseng and Saffron.


www.acupuncture.org.au

parents' room

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12104631


I suppose there are mothers breastfeeding in the parents' room

ABC letter E for elephant

Saw this in a cake shop.
I am sure it is a book.

https://abcwednesday.com/

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